Monday, February 18, 2019

Week 287: And a half

February is a competitive month. January set a high bar, but February is doing its best despite being 3 days shorter. As anticipated, we had yet another snow day on Tuesday. And Sunday would have been a snow day had it been a school day, but luckily, it wasn't. I will refrain from commenting about this coming Wednesday except to say the forecast contains some kind of shape like an asterisk followed by a high two-digit number and a percent sign. At least I have been getting my money's worth out of my 3 different snow shovels and my roof rake.

To continue with last week's parallel themes of planning, weather, and the interaction between the two, here's one I bet you could never have anticipated (I sure didn't). I'm taking a course this semester to try to learn a new skill for my job. Luckily, I live close to a university, and the class I'm taking doesn't start until 4pm. So the whole thing works out perfectly: I go over to Lemon's school, meet him for pick-up at 3:30, get home with him at 3:40, hand him off to the babysitter, hop in the car, and am in my classroom a couple of minutes before 4. So far so good. Except that school has been closed so many days due to weather that if the schools took no actions, we would finish the school year below the minimum number of required instructional hours. What actions are they taking, you might wonder. Well, obviously, they are extending the school day by 11 minutes every day until the end of the school year. Because kids learn A LOT between 3:27 and 3:38pm. I don't usually say that I can't even, but really, I can't even.

Other than that, Lime and I have had a cold all week. Lime almost certainly picked it up at the germ hive (aka preschool), and then I caught it from him since his favorite thing to do when he isn't feeling well at night is to crawl into bed with me and cough directly into my face. Since I've caught this cold from him, every time I cough, he reminds me "Mama, cover your mouth when you cough!" Great tip, kiddo, better file that one away in case it ever becomes relevant to your life. Luckily, Papa Bear has managed to escape thus far. Lemon may have a touch of it, it's hard to tell. He's definitely a tick above baseline in terms of cough at the moment, but not as bad as Lime or I, and I sure hope he escapes it. We could really use 3 more healthy weeks to put on some weight.

Tomorrow is Lemon's half-birthday, which we are celebrating with cupcakes at school.This is the first year where he's expressed any interest in his half-birthday, or in being something and-a-half. He also has his first real loose tooth, which he is very thrilled about. To look at the huge mountains of snow around our neighborhood, you'd be hard pressed to believe that it's ever August here, never mind that such a thing could happen in 6 months time, but here's hoping it's true!








Monday, February 11, 2019

Week 286: Nothing to go on

At least once per month (week/day/hour), I tell myself that I am officially giving up on ever making a plan about anything. But, the planning instinct is strong within me, so moments after resolving to no longer attempt to plan, I start planning again. This is where planning got me over the past 10 days or so:

1. I planned to have Lime's dentist appointment on January 30, but it was cancelled due to the polar vortex.

2. The next available date they had was the morning of February 6. Without looking at the calendar, I accepted.

3. I realized after consulting the calendar that Lemon had clinic on the morning of the 6th.

4. I cancelled the dentist appointment and took their next available, which was in mid-March.

5. On the morning of Wednesday the 6th, the clinic called me saying our nurse practitioner had a family emergency and they had to cancel our appointment. Sigh. Net of zero children receiving scheduled medical care. Now we're going March 6. More time to gain/lose weight I suppose?

6. I had scheduled Lemon to do his multiple breath washout test for his clinical study at 11 a.m. on Friday the 8th, since that was a day on which he was not supposed to have school, and I was not supposed to have any important phone calls for work.

7. The no-school day was replaced with a school day due to so many days off for the polar vortex (see above). And, some changes at work meant that the 11 a.m. phone call went from being optional to mandatory. Perfect. I begged off of the 11 a.m. call, figuring it would be no trouble to make the other mandatory call of the day at 1 p.m. given that the test was supposed to take an hour.

8. Thinking that the test started at 11 a.m. and would only take an hour I planned (you see the problem, right?) to also quickly run Lemon over to the lab afterwards to finally have his blood drawn for his liver tests. I had the lidocaine cream, Saran wrap and tape in my coat pocket to get him ready while the breathing test was going on (more planning, very bad).

9. I also planned (I am incorrigible) to take him to McDonald's when all this was done as a reward.


10. We got to the clinic right on time for the multiple breath
washout test. The test basically involves biting down on a thing that looks like the end of a snorkel and breathing through it. The only trick is to do all the breathing through one's mouth, so that all the breaths go through the apparatus and can be measured by various sensors. The solution: a nose clip, to make sure you don't accidentally breathe in or out
through the nose during the test.

11. Unfortunately, the 3 staff people involved in administering the test were clearly long-term members of Team Zero Planning because, although this is the pulmonary function lab at a children's hospital and the test subject was known to be 5 years old, NONE OF THEM BROUGHT ANY CHILD-SIZED NOSE CLIPS TO THE TEST.

12. We spent a very substantial number of minutes trying to retrofit one of the adult sized ones so it would stay on Lemon's nose. We tried having me hold his nose with my fingers, but then he couldn't see the videos playing on my phone in my other hand (because Team Zero Planning had failed to load the tablet they have FOR THIS EXACT PURPOSE with any videos that might remotely hold the attention of a 5-year-old.).

13. The lead guy who was administering the test then offered that, in a specific drawer of a specific cart located in a specific room in a distant part of the hospital, he had a variety of nose clips, some of which might potentially work.

14. One of the other people was then dispatched to retrieve the above. Much time passed as this other random person attempted to locate the specific room/cart/drawer.

15. The correct nose clips arrived, Lemon did 3 good trials of the test in about 15 minutes, and we were done. It only took 1.5 hours (!?!?).

16. I wasn't about to not take him to McDonald's given that a) he'd been very good, and b) he needed to eat lunch before going back to school. So we scrapped the idea of the lab and went to McDonald's, and I managed to convince him to eat his lunch at an unusual rate of speed (for him) so that I dropped him off at school at 12:59:57 or thereabouts, and then dialed into my work phone call at 1pm. I drove home, but realized that I didn't want to risk going to my downstairs office because my phone almost always drops calls when I walk into my own house (technology, we call this).

17. So, instead of doing my call from my office on the land line, I did it with my cellphone from my car, parked in the garage. Not wanting to asphyxiate myself, I turned off the engine, and the temperature in the car rapidly equilibrated with the outside world at around 8F. Also I didn't have a notepad, so I took notes (wearing gloves) on the back of the envelope containing the $50 we received for Lemon participating in this aspect of the study.

18. We are supposed to get 10 inches of snow overnight.

19. I give up.

Monday, February 4, 2019

Week 285: Vortex Redux

It's good to occasionally be right about something, even if it is something you would prefer not to be right about. In this case, for example, I would have preferred not to be right in terms of my prediction that schools would only be open one day last week. Alas. We managed it somehow, although as with most of these things, in retrospect I am not sure exactly how. It was a growth experience for everyone (note: given the kids new toys with LEDs and musical sound effects is a mixed bag). And, honestly, I don't really second-guess the school's decision to close, it really was too cold for the kids to be outside. I myself only went outside briefly and wearing every piece of clothing I own, and it was bitter out there. This weekend, of course, it was over 40F, just to mess with our minds.

 From the perspective of things I was wrong about,  I was wrong about which week our clinic visit is. It is in fact this Wednesday, not next Wednesday as I had thought. Luckily, eating and tube feeds have been going well and we have managed to get back to where we were in early December! I am using an exclamation point to try and cause myself to be enthusiastic about this fact. We have done far too much work to be standing still, and yet of course things could be much worse, so I should be enthusiastic.









Just to keep things interesting, this week has been laden with scheduling shenanigans. Lime was supposed to go to the dentist on Wednesday of last week, but they had to reschedule his appointment due to extreme cold (this is a thing that happens in Wisconsin it seems). But, they had a spot open this coming Wednesday morning. Yay, until I realized that despite 5 years of parenting I can't actually be in two places at once and Lemon's clinic visit has to take priority. So Lime is going to the dentist in late March, when hopefully weather will be less of a factor in oral health.




Lemon is participating in a clinical study where he is being asked to do some extra tests, including a multiple-breath washout test. I decided it would be too much to tack it on to our already long clinic visits, so I would schedule it for a separate day. I chose this coming Friday, because school was going to be randomly closed. Yay, got that all set up so it would not disrupt his schedule. Then, the school district decided that, given that they missed 4 days of school last week, they would be open on Friday after all, so now I have to pull Lemon out of school for a few hours on both Wednesday and Friday. Fantastic.

I'm thinking the one upside to keeping the appointment on Friday is that maybe at long last we will get his liver labs drawn. We got the orders put in way back when we had our consult with the GI doc months ago. But, I wanted to make sure Lemon was healthy when the labs were drawn, since in the past his liver labs have been high when he's fighting off something. And, well, honestly we have not had enough healthy weeks since the GI consult to actually get the blood drawn. But, this Friday, I'm hoping. Keep your fingers crossed for me!

Monday, January 28, 2019

Week 284: Sinking of the Sea Cow

Well, you know what they say. If it isn't a stomach bug, it's a polar vortex. At least, that's what they say here on the frozen plains of Wisconsin.

The stomach bug dragged on for longer than we would have liked. Even after Lemon's stomach seemed to be on solid ground during the day, and he was feeling fine, he could not tolerate formula at night for several nights. Of course, each night we figured the previous night was just the last dregs of the stomach bug, and were feeling like we had to try for the full feed since he was getting so thin. Anyhow, poor guy and ick. Much ick. But we are now well and truly through it. Of course, Lemon lost all of the weight he gained after recovering from the respiratory thing earlier this month. So now we're back to where we were after Christmas, which is to say 7lb behind where we were at the end of August. This is slightly frustrating. And, with only two weeks to go until our next clinic visit, I think we will count ourselves as lucky if we are just at the same place as we were in December. Feh.



All anyone can talk about this week around here is the weather, so for those of you who don't live around here, let me fill you in. It snowed. Quite a bit. Much to the delight of Lemon and Lime, the city basically connected a plow to every single vehicle in its fleet regardless of intended use and unleashed all of them on the roads. Much to the "delight" of the entire family, there was no school. Tomorrow, school is already cancelled due to extreme cold temperatures arriving courtesy of the polar vortex. By the transitive property of school cancellations, I predict that there will also be no school on either Wednesday or Thursday, as those two days are predicted to be even colder and more vortex-y than tomorrow.






I do chuckle every time I see a news story about "Oh, it hasn't been this bad since the polar vortex of '14." Which, you may recall, struck literally the first full day that we resided in this glorious state. So it's not like we didn't know what we were getting.

I suppose one advantage of not leaving the house again until Friday is that Lemon will be forced to hang around lots of delicious things while not running off all his energy, so he might gain some weight. A disadvantage is that the entire interior of our house may be destroyed, and we may lose our minds. A small price to pay for improved health, right?

As evidence that the weather may already be having an impact on our mental health, Papa Bear has resorted to passing the time by making up Wisconsin origin stories. In particular, we have devoted much dinner-time conversation to the way in which cows came to Wisconsin. You see, milk used to be produced mainly in New York state, and transported by the brave tanker ship Sea Cow across the great lakes to the children of Wisconsin. Tragically, the Sea Cow sank in Lake Michigan under suspicious circumstances, at which point it was decided that it would be better to relocate the cows themselves to Wisconsin, rather than transporting milk in a tanker ship. Thus, all of the cows from New York were transported to Wisconsin, and here we are.

Please send help.

Monday, January 21, 2019

Week 283: Ginger ale and laundry

This has been a really gross week. And I say that in the context of having lived in the same house as two very young children for over 5 years. On Thursday evening at dinner, Lime said his stomach hurt. But, this is something he says (without much meaning as far as we can tell) at least a few times a week, so we didn't pay much attention. Well. Let's just say that later that evening, he won the award for biggest puke in our house ever, and that is with some pretty stiff competition. Without dwelling on the subject, let's just say it wasn't a one-time affair, and that we managed to exhaust both our supply of fitted sheets and of footed pajamas. Mercifully the storm was intense, but brief. After staying home from school on Friday and taking a 4-hour nap, he was more or less restored to good working order.






All seemed to be well after that. Saturday we did the usual things and had a good time all around. Things remained peaceful until about 4 a.m. Sunday, at which point Lemon took over on the laundry-creation front. Sunday was another miserable and gross affair, in which we huddled near non-porous surfaces in our house and utilized an extraordinary number of paper towels. Sunday was the first day in I can't think of how long where we did not even attempt the vest, as there was no way Lemon could have handled it. In the late afternoon, he was feeling well enough that we did do Pulmozyme, just do do at least something to keep the respiratory angle under control. Not wanting Lemon to suffer alone, Lime managed to come up with a brief relapse, possibly brought on by consuming a donut and two pickles in quick succession (his idea, not mine).

Sunday evening, Papa Bear was also not feeling great, although the adult version of this thing seems to confine itself to general malaise and stomach ache without some of the more obvious liquid manifestations. I've had various stomach twinges myself over the last 48 hours, but honestly at this point there is so much psychosomatic stuff going on (not to mention not wanting to touch anything inside my house ever again) that I'm not sure if I have the adult form or if I just think that I might.

It does sort of go without saying that this kind of event would occur 3 weeks out from our clinic visit to check for weight gain. I haven't dared to ask Lemon to get back on the scale yet, and I'm hopeful that if we only lost maybe 2 days worth of calories, the ramifications aren't that bad. Although we certainly didn't make any steps forward, hopefully we at least didn't take too many backward.






Monday, January 14, 2019

Week 282: Fruit Bats

How do you figure out the date? I was trying to figure out which day in January it was yesterday, and my thought process yesterday went, "Well, we're finishing 14 days of Cayston tomorrow, and we started on New Year's Day, so that means today must be the 13th." And, yes, I realize I could have looked at my watch or my phone, but that takes all the sport out of it. Plus, some key date-determining mental pathways in my brain were established in the pre-cellphone era, so my first instinct is always still to work it out rather than to look at some electronic thingie that will tell me. Anyhow, just the small and random ways in which CF works itself into every aspect of your life.

















I had to go to the school at mid-day this week to administer Cayston at the end of recess. When I showed up on Tuesday, the nurse's assistant recognized me and said "Oh, you're the really efficient mom! I haven't seen you yet this year." I was flattered  that she  remembered me, and somewhat disheartened to think that she felt that the fact that she had not seen me until the SECOND day of school after winter break constituted a major absence. I do try to be efficient when I have to do meds during the school day, so I guess I'm glad that's what she remembers me for.

In any case, yes, we finished our 14 days of Cayston today. We debated the idea of stopping at 10 days, but Lemon still had a trace of a cough, and we wanted to be as sure as possible that we'd beaten this thing back, so we did the 4 additional days. We'll see how things go over the coming week but I'm pretty confident that we're good. Weight-wise, we've clawed our way back up to the weight that got us in trouble at our most recent clinic visit. We have about 4 weeks until our next clinic visit, so hopefully we can put on a bit more by then. We're doing our best. Especially since at a recent play date, Lemon and his buddy displayed such enthusiasm for the fruit I put out as a snack that the buddy's mom referred to them as "fruit bats." Let's just say that his tastes continue to run towards lighter fare. Even lighter, if possible. He's transitioned from snap peas to watermelon. I guess strictly speaking he did eat a bite of frosting at the birthday party we went to yesterday, in addition to the strawberries.

Tomorrow I am taking Lime to participate in a study of child development at the university. Probably the last thing I need in my life is extra appointments, but I feel like I want to contribute to whatever research I can. I feel so indebted to the parents of kids with CF who came before me and paved the way for all the treatments that Lemon has access to. I feel like one of the best things I can do is pay it forward in whatever way I can, for whatever disease or indication I can, to make things better for anyone who comes after us. So, this study has nothing whatsoever to do with CF, but with autism, an issue that doesn't affect our family but does affect so many people that we know. Hopefully Lime's participation will help the cause in some small way.














Monday, January 7, 2019

Week 281: Back to basics

Everyone has their own way of celebrating the New Year. In our house, we ring it in with the Azores in the UTC+1 time zone (ie 7pm central time) with a pre-filmed count-down on Netflix. This year, as an added bonus, we decided to start Cayston on New Year's Day. Whatever virus everyone had during Grandma and Grandpa's visit had left Lemon with a really nasty cough. Although we had still managed to avoid puking with very careful titration of our overnight feeds, we still felt like this was a cough that he wasn't going to shake on his own. And, it seems that the evidence is bearing us out on that. After 6 days of Cayston (and 3x daily vest treatments), the cough is basically gone.






















Unfortunately, so is literally all the weight he gained since last winter. Every ounce. He's down 7lb since September. He was very heavy at the end of the summer so he had room to lose some. But really, not this much. I think we must now be below the 30th percentile for BMI, a place we haven't been since Lemon had his feeding tube put in. And, we only have 5 weeks until our follow-up appointment with the CF clinic for a weight check. All together, this has made us feel a strong sense of urgency to get some weight back on this kid. It was having the extra weight that kept us out of the hospital so far this winter, and we are feeling pretty nervous about what would happen if he got sick again now, with no reserves left.

Our sense of urgency has, of course, had a precise negative correlation with his willingness to eat any foods that contain calories. Apple slices, cantaloupe, snap peas, celery, carrots? All received with enthusiasm. Donuts, chips, cookies, cheese, hot dogs? Nope. The one type of high calorie food that he is excited about is McDonald's happy meals. Chicken nuggets? Yep. Cheeseburger? Yep. So, guess which vegetarian has been going to McDonald's twice a week and drinking bad cappuccinos? Yeah, well. Everyone needs a hobby.












Lemon is due to have blood drawn to recheck his liver values. I had planned to take him over the winter break so it wouldn't complicate his school schedule. But, I have a strong memory of just how high his liver values were when we drew labs during a prior illness, and I didn't want to get artificially high readings now. So, we will be doing that some other time. I did manage to pick up a tube of the topical anesthetic so we can apply it to his arm at home before we go in for the draw. Always a little adventure, though. Even though I am asked literally every time we see any healthcare provider which is our pharmacy of choice (PS it is the pharmacy INSIDE THE CHILDREN'S HOSPITAL and has been for over a year), they managed to send the prescription to the wrong pharmacy. When I sent a note asking what had happened to our prescription, the nurse wrote me back saying, "Oh, I sent it to CVS, if you want it to go somewhere else, you can call CVS and ask them to transfer it."

At least, thankfully, the kids went back to school today. Don't get me wrong, it was nice spending time as a family. But two weeks? That is rather a lot of family time. I think the kids are happy to be back with their friends, and I know the grownups are happy to have some peace and quiet to actually get work done. Definitely looking forward to finding out what 2019 has in store for us.